Sunday, August 12, 2012

Makes No Sense at All

My Uncle Paul was a good man. He was the kind of guy that New York City used to mint by the thousands, before the high finance types took over and used their wads of cash to smooth over the wonderfully hard edges that defined this once gritty city. Paul was a quickwitted, happily blue-collar, salt of the earth man’s man, who exuded a nonthreatening air of self-confident toughness that couldn’t hide his huge heart. He loved people, and was a virtual encyclopedia of jokes and one-liners, which he delighted in telling in staccato fashion, one right after another, until he had you laughing so hard that all the jokes blurred into one, making it impossible to remember any individual jest. He laughed just as heartily as his audience, with a big bright smile so infectious it could have been used to solve the energy crisis.

Paulie, as I called him, was a good husband and provider, and although never a rich man always kept my aunt and their three kids from wanting. An unabashed character, he rode motorcycles back in the 50s and 60s, when they were still emblems of danger and rebellion, and not the instant antidote to a midlife crisis or rideable bling that the wonders of modern marketing have turned them into today. A favorite family legend dates back 50 or 60 years, to a time when horse-drawn carts were still used to sell wares on the streets of the Bronx, where my mom’s side of the family grew up. As the story goes, a horse broke loose from its cart and started galloping down the crowded city streets. Paul, a kid brought up on and by those streets, instinctively jumped on the back of the horse as it ran by, and somehow managed to calm and then stop the beast. I’m sure as he dismounted he entertained the cheering crowd that surrounded him with a series of equine one-liners, a twinkle in his eye and a smile plastered to his face and the faces of all those within earshot.

In 1997, two of Paul’s now adult kids, a daughter and a son, died of AIDS within five months of each other, a tragedy so horrendous my mind still reels when I think about it. How brutally unfair, how sadistically abysmal was this twist of fate, a tragedy that makes a mockery of any naïve notions of a just universe. At the time I was living in Florida, and hadn’t seen Paul or my cousins in maybe a decade, and still the news hit me with a blow that bordered on the physical. The emotional storm Paul, my aunt, and their surviving daughter had to weather is, I think, impossible to comprehend, yet when I moved back to New York a few years later and became reacquainted with my Uncle, I was greeted with that familiar fusillade of jokes and that shining bright smile. Still, I could sense the gaping wounds deep inside my Uncle Paul’s soul, the presence of my prematurely deceased cousins always in the air, adding a bittersweet sense of melancholy to each encounter, my uncle’s laughing eyes unable to conceal the hurt beyond healing held within. Still, somehow, Paulie persevered, never publicly displaying any bitterness or despondency, my love and respect for him ever growing.

About six years after I returned to New York, Paul was diagnosed with cancer, and was dead within a year. I was three or four years into my MS diagnosis at the time, and already my mobility was severely hampered, but of course I attended the funeral of this man for whom I harbored such boundless fondness. While standing unsteadily at his gravesite, watching his casket as it was slowly lowered into the earth, I thought about the arc of his life, and couldn’t help but picture Paulie arriving at the pearly gates, breaking up the gatekeepers with some impeccably timed heavenly humor, and then purposefully asking them, “Now, please, please tell me – what the fuck was that all about?”

I often think of my Uncle Paul when contemplating the twists and turns of my own life. We humans (I’m assuming everybody reading this is human) have a tremendous need to try to make sense of things, to seek out order amidst the chaos of existence, from seeing giraffes in clouds or holy visages on pieces of toast, to trying to put the whole of our lives into some sort of logical context, mentally spinning and twisting the puzzle pieces of our pasts in an attempt to make them pave discernible paths to our present. This is especially true when we hit periods of misfortune, and now, despite my efforts to stay rooted in the present, I’m left with plenty of time on my hands courtesy of a crippling disease. Despite myself, I find it almost impossible to not look back and try to sort it all out, as if by identifying just where things went south I might somehow mystically resolve my present predicament, or if not fix it then at the very least explain it. Although I do recognize that there are no real answers to be found, at times I’m still compelled to stare deeply into my past, like a voodoo priestess gazing into a bowl of chicken entrails, and try to comprehend how the path of my life led me to this twilight zone existence, a man forced by disease to gradually watch himself disappear.

There are those who live very self-directed lives, who from a young age somehow knew what they wanted and how to make it happen. I was not one of them. Having now been chronically ill for over nine years, I’ve had a chance to observe some of these strange creatures firsthand. Many times, when in a medical setting, I’ve been shocked to discover the young person I’m talking to isn’t a volunteer or some kind of administrator, but an actual MD, doing their residency at an age at which I was still walking around with all the direction of a fart in a windstorm, counting on some tremendous stroke of luck to turn me into a rock star, actor, or writer. As a young man I suffered from an acute case of HUMA (Head Up My Ass) syndrome. Yes, I was the lead singer of punk rock band, and yes, I did do some writing, but I never did the heavy lifting necessary to turn dreams into reality, instead relying on serendipity to deliver me to what I was sure would be a star-studded destiny, one that would bring the recognition I craved along with the ability to live life on my own terms.

In the wee small hours I often can’t help but time trip back to periods of happiness and also to those of turmoil and discontent, wrestling with just how I journeyed from those places to my present reality. My life can quite tidily be divided into several distinct sections, a chronology of locations and circumstances that neatly cleaves along the lines of the decades of my existence. My childhood and adolescence, during the 60s and 70s, were spent in New York City, Boston played host to my college years and Bohemian post college days during the 1980s, the 1990s saw me become an accidental Floridian and then a reasonably responsible adult, and the dawn of the 21st-century found my path taking me back in New York City, where at first things seemed to almost miraculously fall into place, my career blossoming and a wonderful woman agreeing to be my wife, only to hit an unexpected and treacherous detour in the form of a thus far incurable creeping paralysis.

Along the way I went through many changes, experienced triumphs and disasters, and committed deeds worthy of pride and others of regret. I met terrific people, made lifelong friends, and also encountered my share of liars, cheats, and flaming assholes. The precise path that winds through and connects all of the disparate elements of my history is paved with my own willful acts but also generous amounts of luck, both good and bad, a tidal wave of experience cresting to form the person who I am today. I suppose much the same can be said of almost all people’s lives; though the details and exact mix of ingredients may change, we all share the tragedies, victories, banalities, and scintillations of being human.

So, is there any sense to be made of this? Was there anything in Uncle Paul’s life, or my own, that offer any explanations at all? Did anything in my past presage the current troubles in which I find myself? For much of my life I was almost comically hypochondriacal. Was I perhaps not so much neurotic as prescient? Or is this just another example of the preponderance of chance in our lives; give me a room full of 100 hypochondriacs and I can guarantee that eventually almost all of them will find their worst fears realized.

As a young man, full of piss and vinegar, I loudly proclaimed that I would never succumb to the mainstream 9-to-5 workaday world, which I eventually and begrudgingly did, a fact that I never quite reconciled myself to despite my relative success. But MS put an end to my working life, and gave rise to this blog, which in turn has in bizarre fashion turned many of my youthful pretensions into reality. If, when I was 23 years old, a gypsy fortune teller had told me that in 2012 I’d be living in a high-rise apartment building next to Lincoln Center with my beautiful and loving wife, that my words and pictures would be seen and read by people near and far, that I’d sleep and wake to nobody’s schedule but my own, and that my thoughts might actually impact the lives of others, I’d have jumped for joy, believing that all my dreams would come true. Of course that fortune teller would have left out one tiny detail, an asterisk that would transform dreams fulfilled into, well, if not quite nightmares then something treacherously close.

One can drive themselves to madness constantly searching for answers to questions that might not even be questions but simply constructs of that strange human predilection for finding patterns in the sand. In the end, all we have is the present, and the best use to be made of the past is to learn from its hits and misses to how make the most of the moment now occupied. The future, for the sick and healthy alike, has yet to be written. We can exert our influence on it, but inevitably a large part of our fate is out of our hands, and just as it’s a fool’s errand trying to make sense of the present by ruminating over the past, it’s equally unwise to try to foretell the future based on current circumstances. The only sense to be made is that there is no sense; my uncle didn’t deserve his ill fate but neither does the son of a billionaire deserve the silver spoon they are born with. In the end, all of my pondering has led me to one conclusion, that we’re all just gamblers taking part in a giant crapshoot, and the best we can do is try to nudge the odds in our favor, blow on the dice, and let them roll…

POSTSCRIPT: As I was finishing this essay, the Olympic closing ceremonies were on TV in the background, and I suddenly heard this song filtering through. Perhaps there are more things in heaven and earth than are dreamt of in my philosophy…

22 comments:

As I sit here having a break from the vigilance over Hubber's brother (Paul) who is in his last hours as a result of melanoma cancer, and explaining to my father in law (who has Alzheimer’s) for the 5th time today that his son is dying...I too wonder, what's the point of it all. But then, I realised many moons ago...life is indeed a crapshoot.

It's times like this, that I feel my roll of the dice is somewhat in my favour. Even though I didn't roll a winner, with the MS and Lupus, I'm at least breaking "even"...for now.

Indeed all we have is this moment. Always look on the bright side...and if you can't see it, look harder.

So sorry to hear about your husband's brother, and his dad. Not to mention your own MS and lupus. Sounds like you certainly have your plate full.

Sometimes it seems that breaking even is really the best we can ask for. I'd like to think that, in the end, the good and bad even out, but I think that's a bit of wishful thinking. Some eventually wind up on the positive side of the ledger, some on the negative, but then again positive and negative are subjective labels with which we choose to label the events of our lives. It's that old crapshoot thing again.

First of all, I am truly grateful to have the opportunity to read your extremely wise words of wisdom. Never has some words on a webpage made me laugh, feel happy, terrified, sad, exhilarated, wonderment, excitement, joy, and grateful all within a few minutes of each-other. I even shed a tear. I get true enjoyment out of reading your jokes and I am always sad when I get to the last few sentences of your most recent blog post.

I can't even put into words what I really want to say to you. So I'll just end with this...You continue to make me want to strive for more and persevere through my trials and tribulations with a smile on my face.

PS. I don't know if you've been following the story of Talia, a 12 yr old girl who has cancer and faces unfathomable decisions about deciding if she wants to continue to fight or let things lie where they may and just enjoy the rest of her life(the little that she appears to have left). She has shown me what it really means to be brave(as have you) and I almost feel ashamed for my petty issues I deal with and complain about. I try to remember everyone has their own journey and, like you mentioned, I just have this moment to work with and it is silly to live in the past or future trip. Unfortunately I'm not very good at living in the moment, but I sure do try and practice it a lot :)

BTW, I'm a huge metal fan and I love punk, too. I'd love to hear any songs you may still have. Which bring me to an Iron Maiden song, hallowed be they name. Some of the lyrics are, "When you know that your time is close at hand, Maybe then you'll begin to understand, Life down here is just a strange illusion."

When I was a kid I didn't appreciate what the song was saying. After being diagnosed with Transverse Myelitis, the lyrics haunted me for a while. I guess I had a lot more to say than I thought, sort of writing out loud. I hope you don't mind...Again, thank you for being you.

Dave-glad to hear that you get so much from my posts. I'm still surprised that anybody actually reads these things, much less finds them helpful. Thanks for your generous words.

I hadn't heard of Talia, but it does sound like she is one brave little girl trying to deal with a difficult to ponder situation. Her quandary is one faced by many people dealing with terminal and/or debilitating diseases, weighing quantity vs. quality of life. I often think that our society places far too much emphasis on quantity, when quality is really what it's all about.

Living in the moment can be difficult, but it's a skill you must consciously exercise, and as with all exercise, the more you do it the easier it gets. I don't think very many are ever completely successful at it, but just making the effort is therapeutic in itself.

I do have several of my old band's old tunes in MP3 format, one of these days I'll post one on the blog. I'm sure the record companies will come running…

We, as humans, have this evolutionary trait to seek explanations where none exist. For example, our ancestors who were walking along on the African savanna would see tall grass moving and explain it as a lion following them, even if it was only the wind. The penalty for "seeing" something that wasn't actually there was simply that you ran when he didn't need to run. The penalty for dismissing the presence of an actual lion could be death. Evolution, being about the survival of the fittest, favored humans who sought more patterns in the world than actually exist.

And we still do that today. We try to see reasons for misfortune (and good fortune) when often times no such reasons exist – it was simply luck. Everything happens for a reason? I don't think so. Everything happens, and we simply adjust and move on as best we can.

Mitch-thanks for that terrific explanation of our need to find recognizable patterns in random objects or events. better to run than get eaten by a lion. Words to live by. Literally. Makes perfect sense.

Well,makes sense except for this "evolution" thing that you speak of. Balderdash! Next you'll have me believing in gravity!

Your cultural ancestors were asking the very same questions you pose. If you are ever moved to read the books of Job or Ecclesiastes, you will read about two individuals who have since achieved everlasting fame for pondering about the imponderable quality of life.

"If, when I was 23 years old, a gypsy fortune teller had told me that in 2012 I’d be living in a high-rise apartment building next to Lincoln Center with my beautiful and loving wife, that my words and pictures would be seen and read by people near and far, that I’d sleep and wake to nobody’s schedule but my own, and that my thoughts might actually impact the lives of others, I’d have jumped for joy, believing that all my dreams would come true. Of course that fortune teller would have left out one tiny detail.."

Love this. As a 20-something who thought she had it all figured out, I never would have dreamed that I'd be where I am now. It's way better than I imagined, even with MS. Thanks, Marc. Rock on.

My brother always had a saying that drove me cazy....."It is what it is".It took my son getting MS and other family issues for me to get it.....It is what it isno matter how much I fight against it. Great insights as usual.

Thanks, Hilda. It is what it is, indeed. In many respects the key to serenity is accepting the circumstances thrust upon us, rather than struggling against them.the Taoist Masters tell us that sometimes more can be accomplished by doing nothing than straining against that which is inevitable.The key is concentrating on those circumstances that we might change…

Lisa and I resonate to the same paragraph in your piece, though as a 20 year old I did not have it all figured out and knew it! I spent decades looking for answers and finally decided they did not matter anyway. What mattered was getting the heck out of my endless, spinning navel-gazing and enjoying what was around me. So I don't know "Why me?"

I don't know if I did or did not do something or thought or did not think something, or had no faith or got too angry or grew up in the wrong place or didn't eat my vegetables. I know from experience that finding the reason won't be of any use at all. Thank goodness all that searching was beaten out of me before I got Dxd because I've been able to use the past nine years to get the most out of life that I can.

I can say honestly, that they have been some of the best years of my life. And the fantastic bonus is having friends like you, Marc, and so many others I've never even met, but feel I know so well.

Nice to hear that the last nine years have been the best of your life. Sometimes it takes true hardship for us to appreciate the simple fact of being alive.

As you so wisely say, even if we could discern reasons, what difference would they make once the die has been cast.there is some magical thinking involved, imagining the present can be changed by unlocking the secrets of the past.

I completely agree with the others. Fascinating, well-written, thought-provoking piece. I can't image life without your words...something that would never have happened had you not encountered this monster. I would never wish it on you (or anyone) but I'm grateful you grabbed the experience and wrote it down.

Sue, thank you. Despite our conclusions that there are no reasons, this blog has at least given the hint of reason to my getting sick. Also makes me wish I had taken my writing more seriously decades ago, but better late than never. At the very least, I now have something interesting to write about…

Marc, I must congratulate you on yet another journey this one as much philosophical as physical. I'm also sidelined with MS. More watching the game as playing it from the relative safety of my powerchair. Sometimes this unique perspective allows me to see courage, valour and heroism where empathy, compassion and self-less acts are both welcomed and encouraged. I sometimes pause to reflect on these qualities; for they would not exist in a perfect world without, trial, hardship and perseverance but as often as not I turn away shaking my head.Thanks for sharing your heart with me..............Steve Tasmania Australia

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...